Help Becky get life changing treatment.

Hi, my name is Becky – thank you so much for coming to my GoFundMe page. I never thought that I would be in a position where I’d need to fundraise for my health.

In March this year, I was living a normal life, working, going out and very healthy. However, because of a steroid-induced eczema flare-up in April this year, I was prescribed steroids which have resulted in my developing a chronic condition called Topical Steroid Withdrawal. This has turned my entire life upside down. Biologically speaking – this is an extreme and adverse effect of stopping steroid use.

As you can see from the pictures, from head to toe I am covered in painful, dry, and flaking skin which has impacted every aspect of my life and I have been living in agony. The itchiness is unlike anything I’ve ever experienced, it’s bone-deep and relentless to say the least. I’m currently unable to eat gluten or dairy and go out in the sunlight. Routine activities such as showering and sleeping are painful and it’s impacting my ability to live a normal life.

Other symptoms include; extreme sweating and shivering, bruising, oedema (painful swelling of my joints and limbs), rapid weight loss, infections, hair loss, uncontrollable limb jerking, anxiety, insomnia and open and weepy sores.

Unfortunately, because this is such a rare condition diagnosis and treatment from the NHS is not an option. I’ve been pushed from pillar to post and the only option I’ve been given are immune suppressants which are unsuitable for me and would only delay the inevitable return of this debilitating condition.

ITSAN is a charity supporting individuals with TSW. They have defined the condition as “Topical Steroid Withdrawal Syndrome is characterized by red, itchy, burning skin that can appear after ceasing topical steroid treatments, or even between treatments. Topical steroids are effective for a short period of time to treat skin conditions. As time passes, however, applying topical steroids results in less and less clearing.” (ITSAN, 2023).

For context, I was still a baby when I was prescribed steroids for the first time. I used them on a regular basis until the age of 18 when my eczema cleared up. This year I visited my GP because of a rash which was misdiagnosed as eczema and therefore I was prescribed a steroid cream to treat it. This caused a localised adverse reaction, but afterwards, nothing quite returned to normal. Suddenly, I was breaking out in new areas where I never had eczema before and itching all over, as well as losing my hair. Again, I was misdiagnosed with eczema and given yet more potent steroid cream. Following this course of cream, I experienced a severe reaction that took over my entire body.

In early May some research led me to find out about TSW and because of this, my trust in our healthcare system shattered because the very thing that was supposed to be making me better was actually causing the problem all along. Yet, to this day, the NHS are not able to support me to get better.

However, there is a chance for me to get my life back. There is a treatment available called CAP Treatment (Cold Atmospheric Plasma Ultra-Pulse Contact Therapy). The fastest way for me to get my life back is by travelling to Thailand where I can be treated in September for up to 5 months with the hope of being able to continue my treatment at the UK centre (which is currently inundated with patients and has a closed waiting list).

CAP technology is an emerging technology in aesthetic and medical sciences. It is a form of electromagnetic wave therapy and is commonly used in the treatment of chronic wounds. It has been proven popular in applications to skin concerns due to its ability to accelerate healing, while reducing the bacterial load on the skin, without negative effects.

The length of my treatment, and therefore the time I will need to spend in Thailand, will be determined by how fast my body reacts to the therapy. But from past patients, I’ve read it's approximately 4-6 months which means I could have my life back at the start of 2024.

They have a great website for more in-depth information which you can access here

Costs for treatment:

• Weekly treatment session for 2 hours (£183 p/w)

• Serum bottle (£76 p/w)

Costs to get me to the treatment centre:

• Flights (£1,200 return)

• Rent (£400-500 p/m)

• VISAs (up to £500)

Overall, I need your help because I estimate that this will cost me around £10,000 which is money that neither my family nor I have available. I will also have to take unpaid leave from my role as an Events Coordinator, something which I love dearly and cannot wait to get back to.

Because the number of sessions I’ll need is hard to tell just yet and there is a lot of variables associated with my costs I pledge to donate any excess funds to a charity which will support other people suffering from TSW.

I cannot express enough how grateful I am for any support you are able to provide me – be it financial or emotional. From the bottom of my heart, thank you as you will help me to get my life back. Any donation, no matter how small, brings me one step closer to changing my life and being able to live a life free from suffering.

Thank you all so much,

Becky x